After rounds today they decided that they will extubate her, take the breathing tube out, today. This was confusing to me at first because her lung is looking worse. They said that her heart function is handling everything fine so they just need to give her time, like any kid would need time, to recover from an illness. She was well compensated before she got here so they believe that she can get well on her own and her heart will handle it fine. They also said all the things they have done can actually make it worse – the PICC line, arterial line, the breathing tube, the sedation is all not helping her.
I still have some more questions about how this unfolded.
Hana is a real fighter so this may be a better course of action for her just getting better on her own.
The lingering question that will need to be answered is the one that is always in the background – does this mean it is time to list her for transplant? If this is what happens every time she gets rhinovirus then I think maybe it could be time. The heart failure/transplant team said they need to get together and have a serious discussion amongst themselves soon.
So, the x-ray looks a little worse but listening through stethoscope she sounds better. They said the x-ray can “lag” behind what is actually going on. They stopped her feeds so that her stomach is empty and they can do the extubation today around 3pm. I was talking with the night nurse last night and she was telling me that often when they put in a PICC line or a breathing tube that there are only two people at bedside. With Hana there are usually about ten. This makes me nervous and just reminds me how delicate and careful they need to be with every move they make.
Let’s visualize a successful extubation today and clear lungs soon!
Hana’s X-ray last night looked the same and the one this morning looked worse. I don’t know how much worse, I haven’t seen it and no one has qualified it other than to say “we lost some ground”. The worry over the night was Hana’s blood pressure which was a little too “soft” or low from what I could tell. She also hadn’t peed in quite a while. The did an ultrasound of her bladder around 2 a.m and then catheterized her which yielded some urine. I guess morphine causes you to retain urine.
This morning her blood pressure looks better around 70/40. They are considering other options beyond the APRV (airway pressure release ventilation). One of those options includes taking the breathing tube out to see how Hana does on her own in inflating her lung – this is still the best way to inflate a lung. She has been taking more breaths on her own. Until they decide on rounds today about her lung they are flipping her prone for 18 hours and supine for six hours. They may also do a CT scan to make sure they aren’t missing something else that may be going on.
I really want to hold my sweet girl! I guess she was wiggling a lot early this morning (it took the nurses an hour to get her calm during their shift change, so I wasn’t there) and I’m worried that her hearing my voice makes her squirm even more so I’m trying to be quieter and touch gently. It sucks having these gloves on. My mom is here now, so that helps.
Let’s visualize some progress today!
The last X-ray started to show improvement in Hana’s left lung, in the upper lobe! You can also hear some breathing on the left side. When I listened again this evening I could hear even more breath sounds than this afternoon. They also decided to move her prone to help her lung open even more. It did take a lot of medication tinkering to get her sedation right. She was still squirming a lot and they barely got a good picture for the last X-ray. They started her on propofol to keep her calm which they typically use in the OR. They’ve taken her off versed and decreased morphine.
The only snag today was doing another arterial line. I went in when they said she would be done and the attending Doctor was in there gowned up with a hair net thing on. I asked him if I should be worried that he was there and he said no and then something about an artery spasm. In the end, they got the art line in and all seems to be well.
While Hana was on her stomach and sedated I worked on getting her matted hair untangled. She has wild hair on a normal day! I’m a little worried about Hana’s blood pressure because it is kind of low – around 60/35. Her other vitals are fine. Blood gasses are showing CO2 a little high but as long as her blood pH doesn’t get too low they are ok with it short term. Her potassium has also been low so they have been giving her that too.
They’ve talked about extubating her as early as tomorrow! Hopefully that will go smoothly too.
(They just reduced her propofol and talked about maybe increasing milrinone slightly, blood pressure was even lower.)
They are doing another chest X-ray around 10:30 tonight.
The last X-ray of Hana’s lung looks pretty much the same. This was very disappointing for us. The good thing is they are starting to hear some breathing in the left side. Today they are going to try something different with the ventilator to help open her lung. They will push more air in her lung to try to inflate it and then hold it there for 3 seconds. Then they will let it deflate just a small amount for a split second (0.45). They have to check her blood gases carefully to make sure there is enough oxygen/carbon dioxide exchange. Her CO2 has been a bit high. They will do another chest X-ray this afternoon.
Hana has been wiggling around a lot so they’ve been adjusting her meds. They have been giving her a bit more Ativan to help keep her still and calm, they don’t want her disrupting the placement of her breathing tube. She is also getting a morphine drip. They’ve talked about putting her back on Precedex. They want to back off her milrinone as soon as possible but not quite yet. Other than that her meds are unchanged.
Hana is back to getting continuous feeds or straight breast milk – to her usual daily volume. The arterial line they put in yesterday stopped working, which is a bummer, but they will put in another one today.
On another note the attending doctor in the CVICU said there have been studies showing a correlation between UTIs and respiratory infections, but they don’t understand why. So maybe the UTI made Hana more susceptible to rhinovirus.
Through all of this Hana has done extremely well, so that is definitely a positive!
Let’s hope for more progress today!
Below are two pictures, one from yesterday and one from February. Look how much Hana has grown! We also have so much to be thankful for – things were a lot worse 11 months ago.
The intubation went very smoothly and easily! Then there was about an hour before the pulmonologist went down the breathing tube with the bronchoscope. Hana was coughing and gagging a lot and fighting just a little in between.
The bronchoscopy went well too! They said it didn’t look too bad when they went in and that maybe just putting the breathing tube already started to help things. They cleaned things out with saline in her left lung, took some pictures and took a mucous sample. They will send the sample for testing. They may do another bronchoscopy depending on how her chest X-ray looks tomorrow.
She is on milrinone, fentanyl, versed, and epinephrine which they are starting to back off. They are going to restart her Lasix and give diuril. They will also give potassium because that was low but all her other labs look good. They haven’t been giving her carvedilol or enalapril. They will start a continuous feed of straight breast milk. She’s handled things beautifully, now we just need a nice clear X-ray and then a successful extubation (she’s had a very scary extubation. And then difficult reintubation in the past). Her culture came back positive for a UTI (we’ve been struggling for a week with severe diaper rash because she was having very frequent poopy diapers – almost once an hour). They think the UTI timing is just a coincidence.
Than you for all the positive thoughts!
Hana slept peacefully overnight. Unfortunately her X-ray looked about the same – although her right lung looked a little better. Her left lung is not making progress. So, they recommended we move forward with intubation. They will put a camera down her throat to see what is going on and then wash out what needs to be cleaned out.
This comes with a lot of risks for someone like Hana. They say, since her heart is already on the brink, that the sedation could push it over the very fine line. They talked about her heart stopping and maybe having to put her on ECMO. These things are very, very serious.
Or, they clean things out and tomorrow they can take the breathing tube out and she starts to recover. My thoughts are “let’s get her lung cleaned out and on the road to recovery.” Hana looks really good and us holding her own in other ways so they want to proceed before things get worse and it becomes urgent. When they took the CPAP mask off for a few minutes her respiration rate did get very high and heart rate became a bit elevated so I think now is the time to make a move.
Please imagine Hana getting intubated successfully, her lung getting clean and reinflated and then the breathing tube coming out easily and smoothly!
Hana is VERY cranky this morning. She hates the mask, she hates the wires, she is desperately thirsty. I’ve never seen her so angry and inconsolable. She is arching her back, kicking and squirming.
Here is a rare, still moment:
It’s felt like a tough day. When they do or discuss treatments they have to mention all possible risks and some of them are hard to hear. So I cried a little today.
Today they put in another IV and also the PICC line. The PICC line requires sedation which is very risky. There were 10 people around to do it. We were told it was best to leave and come back in an hour. It was successful, thank goodness. Then they put Hana on CPAP, which she hates. They have her on IV milrinone and dexmedetomidine which is a sedative. It’s been hard to keep her calm and we’ve had to put the mask back on at least four times. I hope she will tolerate it.
Her latest x-Ray came back a little worse. Hopefully the CPAP will help.
Hana was looking at me and she did not look happy. She was still and quiet. I wondered if she were thinking that all this pain was too much. I whispered to her, “it’s worth it. Life is worth it.” It made me think and feel grateful. I whispered, “getting to love people like you make it worth it.” I hope I live my life true to my words. It was a good reminder to myself – go and live life like it is worth it.
Thank you so much for all the support. We are so grateful!
Her left lung looks the same and her right lung is starting to look bad, this is after the 3am X-ray. They will start more aggressive therapy today. They will start with CPAP which may mean Hana can’t have her pacifier. We are doing CPT or hitting her chest and back to help break up the mucus. The dilemma now is partly that sedation is required for more aggressive therapies and that is a risk to her heart. If this doesn’t work they will need to intubate her. They’ve stopped her feeds and will place a PICC line later today.
I wish the news were better.
Hana tested positive for rhinovirus which is basically the common cold but it means we have to wear gowns, gloves and masks. In other news, Hana is very hungry/thirsty. She’s been trying to lick the bag of hanging solution. Last night they gave her a bottle of fortified milk and she drank 130mL (more than 4 ounces) – it was amazing. It was the first time she looked happy and she finally settled down. She also got a good night sleep.
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The short update is – they don’t think Hana’s heart has gotten any worse. This is good news. Last night, or was it this morning? They did another chest X-ray at Stanford and say a big white
area where her left lung is. That is what made them worry and want her down in ICU. Everyone was quite worried that her heart function was worsening and fluid was backing up into her lungs. Hana’s cardiologist thought he was going to have to come in to have the “it’s time for the transplant” talk.
It turns out Hana’s left lung is “collapsed”. They believe it is filled with mucus from a cold or infection or both. Since her heart is so enlarged and pushes on her left lung it is very easy for a little mucous to get trapped and push her over the edge. They are checking for RSV (Hana gets a monthly injection to prevent against this) or pneumonia. But it could also just be a cold. They also have preliminary findings that she may have a urinary Tract Infection. Hana has had a terrible time this last week with poopy diapers, which I thought was due to a new probiotic. She has terrible, terrible diaper rash. We’ve been spraying her butt clean instead of wiping and letting her go diaper less and trying all sorts of creams but we were struggling with getting it under control. Anyway, Hana has not had a fever so maybe it’s early on in her UTI, I don’t know. I thought she was just cranky because she was getting another molar! (And maybe that is why she was cranky.)
Hana has been on oxygen – High Flow (10 L) in which she is getting albuturol and something else to help open her lungs. They are starting her on an antibiotic. They did another chest X-ray and felt okay decreasing the High Flow and starting her on a continuous feed or breast milk. Her vitals have all looked good as do her bloodwork numbers.
Hana has been VERY cranky. She didn’t really sleep last night and I think she was hungry and very uncomfortable. It took six sticks to get an IV (the lady in the CVICU got it easily in one try). We are in the “pod” here in the CVICU which means she shares a room with six other patients. It’s hard to sleep because of all the noise!
I finally took a two hour nap after 30 hours awake. I was falling asleep while texting. Our friend Judy came down to
help relieve us at Hana’s bedside. Tonight Paul and I have a sleep sofa upstairs. Thanks for all the support!
Here is a picture from last week:
I thought Hana was breathing kind of fast (more than 50 respiration a per minute) while sleeping. When I checked again it was still over 50, several hours later. They told us to go to the Kaiser emergency room. There, they did bloodwork, tried to get an IV, took a chest x-Ray. They transferred us by ambulance to Stanford. Here they decided to move her to the CVICU. We are waiting for a bed and I’ve been up 24 hours almost. They tried to get an IV here too and couldn’t. I’m too tired to type any more.